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An Holistic Approach




Updated 12/9/2009                          1
Palliative Care
  Learning Outcomes for this work shop:
     1. Demonstrate knowledge of the principles and
      philosophies of a palliative approach in the Aged Care
      setting.
     2. Improve the knowledge of the roles of the palliative
      care team.
     3. Understand pain & symptom management principles.
     4. Demonstrate an understanding of the psychological &
      spiritual support mechanisms.
     5. Know where to seek more advice.

Updated 12/9/2009                                               2
Palliative Care
  Standard 2.9 – Palliative Care
     Expected outcome – the comfort & dignity of
      terminally ill residents is maintained.
     Criteria – Policies & Practices provide:
             A. that residents wishes are identified, respected and where
              possible, acted upon in relation to their terminal care; and
             B. individual palliative care programs that enable family
              involvement, accommodate religious and cultural beliefs and
              recognise an individual’s right to die with dignity.




Updated 12/9/2009                                                            3
Palliative Care
  Definition :
    WHO –
    Palliative care is an approach that improves the quality
     of life of patients and their families facing the problems
     associated with life threatening illness, through the
     prevention and relief of suffering by means of early
     identification , assessment & treatment of pain and
     other problems, physical, psychosocial and spiritual.




Updated 12/9/2009                                                 4
Palliative Care
  Palliative care :

       Provides relief from pain and other distressing
          symptoms,
         Affirms life & regards dying as a normal process,
         Intends neither to hasten or postpone death,
         Integrates the psychological & spiritual aspects of
          patient care,
         Offers a support system to help patients live as actively
          as possible until death,

Updated 12/9/2009                                                     5
Palliative Care
       Offers a support system to help the family cope during
        the patient’s illness and in their own bereavement,
       Uses a team approach to address the needs of the patient
        and their family, including bereavement counseling,
       Will enhance the quality of life and may also positively
        influence the course of the illness.
       (WHO – definition of palliative care –
        www.who.int/cancer/palliative/definition/en/)


Updated 12/9/2009                                                  6
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Palliative Care
  The need for palliative care does NOT depend on
    diagnosis, but on the individual person’s needs –
    particularly the complexity & severity of a person’s
    distress or their potential for distress.




Updated 12/9/2009                                          8
Palliative Care
  The primary goal of palliative care in an
    aged care setting is to :
      Improve the resident’s level of
       comfort & function,
      And to address their
       psychological, spiritual & social
       requirements.
Updated 12/9/2009                              9
Palliative Care
      These categories underpin
      the provision of care, and
      therefore the guidelines to
      assist practice through an
      educative process.

      The guidelines are inter-
      related and no one should
      be considered in isolation
      from the others




Updated 12/9/2009                   10
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Palliative Care
  A palliative approach aims to improve the
   quality of life for individuals with a life-limiting
   illness and their families, by reducing their
    suffering through early identification, assessment
    and treatment of
    pain, physical, cultural, psychological, social, and
    spiritual needs.


Updated 12/9/2009                                          12
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Palliative Care
  Underlying the philosophy of a palliative approach
   is a positive and open attitude towards death and
   dying.
  The promotion of a more open approach to
    discussions of death and dying between the aged
    care team, residents and their families facilitates
    identification of their wishes regarding end-of-life
    care.


Updated 12/9/2009                                          14
Palliative Care
 • A palliative approach is not confined to the end
   stages of an illness.
 • A palliative approach provides a focus on active
   comfort care and a positive approach to reducing
   an individual’s symptoms and distress.
 • This facilitates residents’ and their families’
   understanding that they are being actively
   supported through this process.


Updated 12/9/2009                                     15
Palliative Care
  What are the barriers to a Palliative Approach?
    1. In Western society people are often afraid of
     discussing death & dying.
    2. There is confusion between palliative care and
     euthanasia.
    3. ACF’s often do not have up to date knowledge and
     definitive guidelines about Palliative Care and when and
     how to implement it.
    4. Specialist knowledge (ie. A Palliative Care team) is
     often not sought.

Updated 12/9/2009                                               16
Palliative Care
  An Australian study has projected that there will be a
   70% increase in older Australians over the next 30
   years with profound disabilities.
  Conditions included are :
       Neurological – Parkinson’s, stroke, dementia, motor neurone disease.
       Musculoskeletal – arthritis, osteoporosis, muscular dystrophy,
       Circulatory – vascular disease, heart attack, heart failure.
       Respiratory – COPD, asthma, emphysema, cystic fibrosis.
       Endocrine – diabetes.
       HIV/AIDS
       Cancer
       Renal & liver disease.

Updated 12/9/2009                                                              17
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Palliative Care
  Advance Care Planning :
     The Aged Care Act stipulates that residents must be
      given the opportunity to make choices about their care.
     This includes their right to agree or refuse treatments
      offered.
     Advanced Care Planning is a process which enables the
      resident to be able to make decisions about their end-of-
      life wishes in writing, which then removes the burden
      of responsibility from the surrogate and leaves the
      control with the resident.

Updated 12/9/2009                                                 19
Palliative Care
  If the resident is unable to make these
    decisions, It’s important for families to
    be involved in all steps of the planning
    process, including acceptance or
    refusal of treatments and ongoing care.



Updated 12/9/2009                               20
Palliative Care
  Having “The Discussion” regarding end-of-life
    wishes.

       Best done either before admission to the ACF, or
         immediately upon arrival.

       If not done, treatment decisions will be made on the run
         in crisis mode, and unnecessary transfers to hospital or
         unwanted treatments which do not meet the goals or
         wishes of the resident or family may occur.

Updated 12/9/2009                                                   21
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 Advance Directive documents tend to address issues
         such as pain control, comfort care, place of dying and
         hospital admission.

       These documents need to be flexible to take into
         account unforeseen incidents, such as fractured hip or
         pneumonia.

       No one should be forced to participate in the discussion
         if not willing.

Updated 12/9/2009                                                  23
Palliative Care.
  See document – “Clinical Practice Guidelines for
   communicating prognosis and end-of-life issues with
   adults in the advanced stages of a life-limiting
   illness, and their caregivers.”
  www.mja.com.au
  MJA supplement, 18 June 2007, Volume 186, number
   12.




Updated 12/9/2009                                        24
Palliative Care
  Identifying the three forms of Palliative care -
       1. The Palliative Approach
       2. Specialised palliative service provision
       3. End-of-life care.




Updated 12/9/2009                                     25
Palliative Care
  1. The Palliative Approach –
  Appropriate when the resident’s condition cannot be
   cured, and the symptoms require intervention.
  The goals are to:
       Improve the resident’s level of comfort &
        function,
       And to address their psychological, spiritual &
        social requirements.


Updated 12/9/2009                                         26
Palliative Care
  2. Specialised palliative service provision


  – appropriate when the resident requires specific &
    focused input by a specialist team – eg. Eastern Palliative
    Care. Not meant to replace the palliative approach, but
    runs in conjunction with it.




Updated 12/9/2009                                                 27
Palliative Care
     The goals are to assess and treat complex symptoms
        being experienced by the resident and providing the
        information to the aged care team on complex issues like
        family issues, ethical dilemmas, distress.

     Should be managed in a timely manner, and not in
      response to crisis.
     May require transfer to hospice for expert palliation if
      facility is not able to manage.



Updated 12/9/2009                                                  28
Palliative Care
  3. End-of-life care – implemented in the final days or
    weeks of life.
       Care decisions may need to be reviewed on a frequent
        basis – daily or more often.
       The goals are focused towards the resident’s
        physical, emotional & spiritual comfort, and supporting
        the family.
       Can be a difficult time to identify as residents often have
        multiple co-morbidities and have a gradual slide in their
        condition.

Updated 12/9/2009                                                     29
Palliative care
  Symptoms that may indicate the end-of-life phase :
     Requiring more frequent intervention – pain
      management, positioning, etc.
     Loss of appetite (anorexia)
     Profound weakness
     Trouble swallowing (dysphagia)
     Dry mouth
     Weight loss
     Lapsing in and out of consciousness
     Day to day deterioration.
Updated 12/9/2009                                       30
Palliative Care
  It is important to :
     Respect the choices that the resident & family members
       make with regard to treatment options,
     Be available to discuss issues with residents and family
       members,
     Provide information in a pro-active way – organise
       family & doctor meetings when the resident’s condition
       changes, to keep them informed every step of the way.
     Allow the family to prepare for the imminent death of
       their loved one by keeping them informed of changes as
       they occur.
Updated 12/9/2009                                                31
Palliative Care
  Who is involved in the Palliative (multidisciplinary)
    Care Team?




Updated 12/9/2009                                          32
Updated 12/9/2009   33
   1. Personal care assistants
       2. GP’s
       3. RN’s
       4. Palliative Care nurses
       5. Volunteers
       6. Chaplains or pastoral care workers
       7. Pharmacists
       8. Pain specialists
       9. Activities co-coordinators, music therapists, social
        works, aromatherapists
       10. Pharmacists
       11. Specialist – oncologist, radiotherapists, surgeon
       12. Psychologist, grief counselor.


Updated 12/9/2009                                                 34
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Palliative Care
                    Palliative Care is a TEAM effort.




Updated 12/9/2009                                       37
Palliative Care
  It is critical that one member of the team assumes the
   coordinator’s role – eg. RN, GP or DON.
  Teamwork between the RN & GP is essential.
  The team must be able to meet regularly and assess
   and discuss management and progress.
  The team should be non-heirarchical.
  The staffing skill mix should be determined on the
   individual needs of the family members and resident.
  It is recommended that at least one member of the
   team has formal training in the palliative approach.
Updated 12/9/2009                                           38
Palliative Care
                     Pain & Symptom Management
  Pain – “pain is a subjective sensation… and is what the patient says it
    is, and not what others think it should be…”
       1. physical suffering or distress, as due to
        injury, illness, etc. 2. a distressing sensation in a
        particular part of the body: a back pain. 3. mental or
        emotional suffering or torment: I am sorry my news
        causes you such pain.
       www.dictionary.com



Updated 12/9/2009                                                            39
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Palliative Care
  Other symptoms :
       Loss of appetite (anorexia)
       Nausea
       Profound weakness / fatigue
       Trouble swallowing (dysphagia)
       Dry mouth
       Weight loss
       Lapsing in and out of consciousness
       Day to day deterioration.
       Insomnia
       Bowel problems – diarrhoea / constipation


Updated 12/9/2009                                   41
Palliative Care
  Pain Management

       Often under treated in many ACF’s and hospitals.


       Often misunderstood.


       Treated on fixed regimes that are not flexible or
         responsive to the need of the resident, eg. 4/24
         analgesia.


Updated 12/9/2009                                           42
Palliative Care
       Often treated only in the physical element, not
         including spiritual, social & psychological elements.

       In an Australian study it was found that 22% of residents
         who stated they had no pain had no record of
         medication administration recorded in their case
         notes, and 16% did not have analgesia ordered at all!




Updated 12/9/2009                                                43
Palliative Care
  Barriers to pain management :
     Lack of knowledge among nurses and GP’s
     Lack of observation skills for pain indicators among
      PCA’s, and inadequate reporting.
     Fear of the consequences of reporting pain among
      residents – reluctant to complain.
     Residents become resigned to their pain.
     Generational “stoic” ideals – ‘stiff upper lip’.
     Cultural misconceptions.


Updated 12/9/2009                                            44
Updated 12/9/2009   45
Palliative Care
  Review ‘Fast Fact #008 – Morphine & Hastened Death’.


  What are the differences between euthanasia &
    palliation?




Updated 12/9/2009                                     46
Palliative Care
       Morphine toxicity will cause drowsiness, confusion and
         loss of consciousness before the respiratory drive is
         compromised.

       If the intent of the therapy is to help the patient and
         have a potentially good outcome – eg. Relief of pain - but
         there is a potentially adverse secondary
         consequence, the treatment is considered ethical.

       Euthanasia is not an example of double effect – the
         intent is to end the patient’s life.
Updated 12/9/2009                                                 47
Palliative Care
       If the intent of giving morphine is to relieve
         pain, and accepted dosing guidelines are
         adhered to, then :
            The treatment is considered ethical

            The risk of a potentially adverse secondary
             effect is minimal, and
            The risk of respiratory depression is vastly
             over-estimated.


Updated 12/9/2009                                           48
Palliative Care
  Tools for assessing pain :
     1. Pain assessment – should state pain
      location, type, frequency & severity, as well as the
      impact this pain has on the ADL’s.

       2. Abbey Pain scale for patients unable to verbalise pain.




Updated 12/9/2009                                                    49
Updated 12/9/2009   50
Palliative Care
           Deciding how and when to implement analgesia.




Updated 12/9/2009                                          51
Palliative Care
  Opioids used conventionally for moderate pain
  - codeine, hydrocodone, oxycodone.


  Typically combined with non-opioid (e.g. Tylenol)
    which limits dose titration

  Opioids used conventionally for severe pain
 -
    morphine, fentanyl, oxycodone, methadone, oxymorp
    hone
Updated 12/9/2009                                       52
Palliative Care
 Tolerance to analgesia:
  A change in the dose-response relationship induced by
     exposure to the drug and manifest as a need for higher dose
     to maintain an effect.
    Develops at different rates to these varying effects
    - respiratory depression, nausea, constipation
    Analgesic tolerance is rarely a problem
    - opioid doses remain relatively stable in the absence of
     worsening pathology and increased opioid requirements
     after stable periods is often a signal of disease progression

Updated 12/9/2009                                                53
Palliative Care
  Principles of Pain Management :

       Mild pain - Regular (4/24, 6/24 or 8/24) use of
         Paracetamol or NSAID’s.




Updated 12/9/2009                                         54
Palliative Care
  Moderate Pain – regular weak opioids – codeine or
    tramadol +/- adjuvant therapy       steroids, NSAID’s
    (used with caution), tricyclic
    antidepressants, anticonvulsants.




Updated 12/9/2009                                           55
Palliative Care
       Severe Pain – paracetamol + opioids         patches –
         fentanyl (Durogesic) or buprenorphine
         (Norspan), morphine – oral, IM or S/C – by butterfly or
         syringe driver.




Updated 12/9/2009                                                  56
Palliative Care
  Management of side effects of pain management :
    Constipation – regular aperients, increased as the
   opioids increase.
    Nausea & vomiting – usually occurs initially, then
     settles. Controlled with Maxalon, sometimes
     stemetil, and Zofran. Also can be controlled with
     phenergan.

       Dry mouth – regular mouth care, ice chips, regular sips.
       Confusion or hypersomnolence (tend to cause sleep) –
         refer to GP or specialist for review.
Updated 12/9/2009                                                  57
Palliative Care
  Fatigue – NEVER normal – always a symptom of
    something!
       Causes – anorexia/cachexia (wasting emaciation)
                    - boredom
                    - pain
                    - psychological issues – depression & anxiety.
                    - sleep disturbance
                    - medications
                    - dehydration
                    - nausea / vomiting
      * Treating the cause can help to alleviate fatigue.
Updated 12/9/2009                                                    58
Palliative Care
  Cachexia – a syndrome combining weight loss, loss of
    muscle and visceral protein, anorexia, chronic nausea
    and weakness.
       Common in cases of cancer, but also chronic heart
        failure, renal failure and dementia.
       More often a cause of distress to the family, and may
        cause extra anxiety about their loved one’s condition.
       Family requires extra education about not force feeding
        their loved one at this time.
       Can be managed with protein drinks and supplements if
        patient allows it.
Updated 12/9/2009                                             59
Palliative Care
  Nausea & Vomiting:
    Causes in palliative care –
             1. decreased gastric motility or gastroparesis – from decreased
              mobility, medications or decreased neuromuscular control)
             2. constipation – treat with aperients
             3. medications – opioids – treat with anti emetics
             4. hyperacidity – treat with antacids
             5. dehydration – treat with fluids or sips
             6. unpleasant odours or cooking smells – remove the source.

             TREAT THE CAUSE TO HELP ALLEVIATE SYMPTOMS.

Updated 12/9/2009                                                               60
Palliative Care
  Personal Care –
     The personal carer can do so much to ensure that the
      final stages of life are as comfortable as possible. Some
      of the areas to be managed are :
             Personal hygiene
             Mobility & positioning
             Breathing difficulties
             Nutrition & hydration
             Elimination
             Skin care
             Spiritual needs
Updated 12/9/2009                                                 61
Updated 12/9/2009   62
Palliative Care
  Personal hygiene –

       Ensure adequate analgesia has been given prior to
        hygiene.
       Ensure room is warm and comfortable.
       Have everything prepared before commencing.
       May want to use aromatherapy – under the guidance of a
        trained aromatherapist, and resident or family
        permission.


Updated 12/9/2009                                            63
Palliative Care
       Gentle sponging and massage can be very soothing.
       This is a time of intimate contact and a good
        opportunity to chat to the resident about their
        care, fears and worries.
       If skin is very delicate, may want to use a bath oil rather
        than soap – this is a good time to monitor skin integrity.
       Change linen and gowns as frequently as needed – the
        resident may become clammy as the time of death
        approaches.
       Attend mouth care frequently.


Updated 12/9/2009                                                     64
Palliative Care
  Mouth Care –
    Poor oral health can result from :
             Medications – opioids, chemotherapy
             Mouth breathing
             Oxygen therapy
             Decreased nutrition, particularly zinc & Vitamin C
             Oral thrush

             A good assessment is vital – treating the cause, and
              implementing thorough and regular mouth care is critical to
              patient comfort.

Updated 12/9/2009                                                           65
Palliative Care
      • A soft tooth brush can clean teeth and
      mouth without damaging soft mucosa.
      • Using mouth swabs and mouth wash
      can provide relief to a dry mouth.
      • Treat oral thrush with(clotrimazole)
      Canesten drops
      • Warm salt water mouth rinses can
      help ulcers and other breaks.
      • Peppermint lip cream for cracked lips.




Updated 12/9/2009                                66
Palliative Care
  Mobility & Positioning
    As the palliative process progresses, mobility will
     decrease.
             The resident will require close monitoring of mobility devices
             As resident becomes bed / chair bound, analgesia may be
              required prior to any repositioning.
             Regular skin assessments are required, and use of pressure
              relieving devices can be implemented – eg. Spenko
              mattresses, sheep skins, spenko booties, air
              mattresses, wedges.
             Gentle massage and passive movement of limbs can help
              prevent contractures.
Updated 12/9/2009                                                          67
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Palliative Care
  Shortness of breath (dyspnoea)


  Resident may experience shortness of breath – some
    techniques to aid this are :




Updated 12/9/2009                                       69
Palliative Care
       Positioning semi-recumbent or on the side
       Using a fan to blow air around the room.
       Oxygen therapy – only to be used under strict
        guidelines – initiating it at this time contravenes
        the palliative approach.
       Suctioning – only to be done by RN.
       Increasing morphine +/- hyocine (to inhibit
        salivary secretion if very ‘rattly’).
       Gentle physiotherapy.
Updated 12/9/2009                                         70
Palliative Care
  Nutrition & Hydration –
    Food & fluids should be offered throughout the
     palliative phase, but never forced.
    Causes of refusal must be explored – eg.
     Hypersomnolence from morphine
             review by physician; or nausea           treat with
     anti-emetics.
    Studies indicate that patients being palliated do not
     experience hunger or thirst, and remain comfortable
     with sips of water or ice chips. (Guidelines for a palliative
     approach – p.88)
Updated 12/9/2009                                                    71
Palliative Care
       It is considered best practice to encourage food for
        comfort and enjoyment, rather than for nutrition’s sake
        – ie. Encourage what ever they want to eat, rather than
        using protein drinks, etc.
       Enteral feeding may need to be considered if dysphagia
        occurs early in the illness.
       PEG or tube feeding is not recommended in later
        stages, as the body may not be able to digest this amount
        of nutrition when the body’s systems are shutting
        down, and there is a greater risk of diarrhoea, vomiting
        and aspiration.

Updated 12/9/2009                                               72
Palliative Care
  Elimination –
       Constipation – a thorough assessment is vital – if they are not
         eating they will not need to defaecate!

             Is their abdomen distended?
             Are they straining?
             Do they say they need to go?
             Is there unusual nausea – not related to medication?
             Hard stools?

             Treat with laxative program – gentle osmotics, or bulking agents
              with suppositories.
Updated 12/9/2009                                                                73
Palliative Care
  Elimination –
     Incontinence – may be faecal and / or urinary
             Assess and use continence aids as appropriate.
             If perineal thrush or severe rash is present, the pads can be
              removed and the resident nursed on a kylie.
             Prompt & gentle perineal care is critical – use of moisture
              barriers, thorough gentle drying (patting) of the area will
              minimise trauma and discomfort.
             Stoma & catheter care to be attended as required.




Updated 12/9/2009                                                             74
Palliative Care
  Skin care –
       Skin integrity can be altered due to oedema of limbs, cachexia, fragile
         skin, sweating, incontinence, chemotherapy or radiotherapy.
             Oedema – elevate the limb, minimal handling, bed cradle, using
              ‘blueys’ if the limb is weeping.
             Prompt wound management
             Use of medical sheep skins, pressure
              mattresses, spenkos, wedges, etc.
             Gentle sponging, avoiding soaps – use bath oils or lotions.
             Soft cotton gowns that wont increase sweating.
             Prompt management of incontinence.
             Ensure diet & fluids are adequate depending on stage of illness.

Updated 12/9/2009                                                                 75
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Palliative Care
  Spiritual needs –
       If advance care planning has been done well, the spiritual needs of
          the resident should be clearly known.
         Cultural and religious preferences must be respected and acted
          upon.
         Family involvement at this time is critical for access to family priests
          or specific cultural practices.
         Pastoral care workers can help comfort staff and residents.
         Complementary therapies can be important to the resident and
          family.




Updated 12/9/2009                                                                77
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Palliative Care
  The room –
       Should be preferably a single room.
       Should be well lit, and well ventilated
       Remove any unnecessary clutter or furniture.
       Encourage mementos, picture, flowers, or other items of comfort to
        be within sight.
       May require a fold out bed, or a recliner chair for a relative to sleep
        over.
       May have aromatherapy or candles – under strict guidelines.
       Have the resident’s favorite music on a CD player.




Updated 12/9/2009                                                                 79
Palliative Care
  The family –
       Good communication between the facility staff and the family is
          critical at all times through out the palliative process.
         The care staff might be close to the resident, and also be grieving.
          This is the time for the family – you should be comforting them, not
          the other way around. Staff should seek counselling if they cannot
          cope.
         The family should be allowed to stay or visit when ever they wish.
         The family members may wish to help with personal care – this
          needs to be monitored carefully, but encouraged if it is positive for
          the resident and family member.
         Professional, religious or spiritual counselling or support can be
          very helpful at this time.
Updated 12/9/2009                                                             80
Palliative Care
  Signs of imminent death –
       Movement slows, facial muscles relax
       Gastrointestinal function slows – abdominal
          distension, incontinence, nausea =/- vomiting may occur.
         Body temperature falls – can feel cool, clammy, looks pale.
         Circulation fails – pulse can be irregular, weak & thready.
         Respiratory system fails – Cheyne-Stokes breathing, or weak and
          shallow respirations can occur.
         Often the ‘death rattles’ occur as secretions pool in the pharynx and
          bronchi – can be distressing to the family, but not the resident.
         Loss of consciousness.


Updated 12/9/2009                                                                 81
Updated 12/9/2009   82
Palliative Care
  Signs of death –
     No pulse
     No respirations
     No blood pressure
     Pupils fixed and dilated.
     The doctor is called to declare death.




Updated 12/9/2009                              83
Palliative Care
  Care of the body after death –

       Should have been determined in the Advanced Care
        Plan.
       The family / loved ones should be allowed to stay as long
        as they want.
       Hygiene care may be necessary if incontinence has
        occurred – standard precautions followed.
       Cultural / religious wishes are to be taken into account.



Updated 12/9/2009                                               84
Palliative Care
       Ideally, the body should be re-alligned in bed, and made
          to look comfortable and presentable for any family or
          friends who may wish to spend time with the resident.
         Place a rolled towel under the jaw if mouth is open.
         Clutter is removed from the room, and fresh flowers
          placed if possible.
         The funeral home is contacted when the family is ready.
         Follow the facilities procedures regarding jewellery or
          valuable removal.


Updated 12/9/2009                                                   85
Palliative Care
  Where to seek help –
    Palliative Care Australia
    Local Palliative Care Associations
    Grief counsellors
    www.health.gov.au
    www.eperc.mcw.edu
    www.pallcare.org.au
    www.pallcare.asn.au




Updated 12/9/2009                         86
Palliative Care
  References :
       “Guidelines for a Palliative Approach in Residential Aged Care”, Australian
          Government Department for Health & Ageing, 2006.
          www.health.gov.au/palliativecare
         “Fast Fact & Concept #008 – Morphine & hastened death”, Von Gunten, C.
          www.eperc.mcw.edu/fastFact
         “Clinical Practice Guidelines for communicating prognosis and end-of-life issues with
          adults in the advanced stages of a life-limiting illness, and their caregivers.”
          www.mja.com.au MJA supplement, 18 June 2007, Volume 186, number 12.
         “Long Term Care Assisting – Aged Care &
          disability”, Scott, K., Webb, M., Sorrentino, S. & Gorek, B. Elselvier
          Australia, Marrickville, NSW, 2204.
         “National Palliative Care Strategy – A National Framework for Palliative Care service
          Development”, Publications Production Unit, Commonwealth Department of Health
          & Aged Care, 2000.
         www.pallcare.asn.au

Updated 12/9/2009                                                                                 87

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.Pall care 3 use this one

  • 2. Palliative Care  Learning Outcomes for this work shop:  1. Demonstrate knowledge of the principles and philosophies of a palliative approach in the Aged Care setting.  2. Improve the knowledge of the roles of the palliative care team.  3. Understand pain & symptom management principles.  4. Demonstrate an understanding of the psychological & spiritual support mechanisms.  5. Know where to seek more advice. Updated 12/9/2009 2
  • 3. Palliative Care  Standard 2.9 – Palliative Care  Expected outcome – the comfort & dignity of terminally ill residents is maintained.  Criteria – Policies & Practices provide:  A. that residents wishes are identified, respected and where possible, acted upon in relation to their terminal care; and  B. individual palliative care programs that enable family involvement, accommodate religious and cultural beliefs and recognise an individual’s right to die with dignity. Updated 12/9/2009 3
  • 4. Palliative Care  Definition :  WHO –  Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life threatening illness, through the prevention and relief of suffering by means of early identification , assessment & treatment of pain and other problems, physical, psychosocial and spiritual. Updated 12/9/2009 4
  • 5. Palliative Care  Palliative care :  Provides relief from pain and other distressing symptoms,  Affirms life & regards dying as a normal process,  Intends neither to hasten or postpone death,  Integrates the psychological & spiritual aspects of patient care,  Offers a support system to help patients live as actively as possible until death, Updated 12/9/2009 5
  • 6. Palliative Care  Offers a support system to help the family cope during the patient’s illness and in their own bereavement,  Uses a team approach to address the needs of the patient and their family, including bereavement counseling,  Will enhance the quality of life and may also positively influence the course of the illness.  (WHO – definition of palliative care – www.who.int/cancer/palliative/definition/en/) Updated 12/9/2009 6
  • 8. Palliative Care  The need for palliative care does NOT depend on diagnosis, but on the individual person’s needs – particularly the complexity & severity of a person’s distress or their potential for distress. Updated 12/9/2009 8
  • 9. Palliative Care  The primary goal of palliative care in an aged care setting is to :  Improve the resident’s level of comfort & function,  And to address their psychological, spiritual & social requirements. Updated 12/9/2009 9
  • 10. Palliative Care These categories underpin the provision of care, and therefore the guidelines to assist practice through an educative process. The guidelines are inter- related and no one should be considered in isolation from the others Updated 12/9/2009 10
  • 12. Palliative Care  A palliative approach aims to improve the quality of life for individuals with a life-limiting illness and their families, by reducing their suffering through early identification, assessment and treatment of pain, physical, cultural, psychological, social, and spiritual needs. Updated 12/9/2009 12
  • 14. Palliative Care  Underlying the philosophy of a palliative approach is a positive and open attitude towards death and dying.  The promotion of a more open approach to discussions of death and dying between the aged care team, residents and their families facilitates identification of their wishes regarding end-of-life care. Updated 12/9/2009 14
  • 15. Palliative Care • A palliative approach is not confined to the end stages of an illness. • A palliative approach provides a focus on active comfort care and a positive approach to reducing an individual’s symptoms and distress. • This facilitates residents’ and their families’ understanding that they are being actively supported through this process. Updated 12/9/2009 15
  • 16. Palliative Care  What are the barriers to a Palliative Approach?  1. In Western society people are often afraid of discussing death & dying.  2. There is confusion between palliative care and euthanasia.  3. ACF’s often do not have up to date knowledge and definitive guidelines about Palliative Care and when and how to implement it.  4. Specialist knowledge (ie. A Palliative Care team) is often not sought. Updated 12/9/2009 16
  • 17. Palliative Care  An Australian study has projected that there will be a 70% increase in older Australians over the next 30 years with profound disabilities.  Conditions included are :  Neurological – Parkinson’s, stroke, dementia, motor neurone disease.  Musculoskeletal – arthritis, osteoporosis, muscular dystrophy,  Circulatory – vascular disease, heart attack, heart failure.  Respiratory – COPD, asthma, emphysema, cystic fibrosis.  Endocrine – diabetes.  HIV/AIDS  Cancer  Renal & liver disease. Updated 12/9/2009 17
  • 19. Palliative Care  Advance Care Planning :  The Aged Care Act stipulates that residents must be given the opportunity to make choices about their care.  This includes their right to agree or refuse treatments offered.  Advanced Care Planning is a process which enables the resident to be able to make decisions about their end-of- life wishes in writing, which then removes the burden of responsibility from the surrogate and leaves the control with the resident. Updated 12/9/2009 19
  • 20. Palliative Care  If the resident is unable to make these decisions, It’s important for families to be involved in all steps of the planning process, including acceptance or refusal of treatments and ongoing care. Updated 12/9/2009 20
  • 21. Palliative Care  Having “The Discussion” regarding end-of-life wishes.  Best done either before admission to the ACF, or immediately upon arrival.  If not done, treatment decisions will be made on the run in crisis mode, and unnecessary transfers to hospital or unwanted treatments which do not meet the goals or wishes of the resident or family may occur. Updated 12/9/2009 21
  • 23.  Advance Directive documents tend to address issues such as pain control, comfort care, place of dying and hospital admission.  These documents need to be flexible to take into account unforeseen incidents, such as fractured hip or pneumonia.  No one should be forced to participate in the discussion if not willing. Updated 12/9/2009 23
  • 24. Palliative Care.  See document – “Clinical Practice Guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers.”  www.mja.com.au  MJA supplement, 18 June 2007, Volume 186, number 12. Updated 12/9/2009 24
  • 25. Palliative Care  Identifying the three forms of Palliative care -  1. The Palliative Approach  2. Specialised palliative service provision  3. End-of-life care. Updated 12/9/2009 25
  • 26. Palliative Care  1. The Palliative Approach –  Appropriate when the resident’s condition cannot be cured, and the symptoms require intervention.  The goals are to:  Improve the resident’s level of comfort & function,  And to address their psychological, spiritual & social requirements. Updated 12/9/2009 26
  • 27. Palliative Care  2. Specialised palliative service provision  – appropriate when the resident requires specific & focused input by a specialist team – eg. Eastern Palliative Care. Not meant to replace the palliative approach, but runs in conjunction with it. Updated 12/9/2009 27
  • 28. Palliative Care  The goals are to assess and treat complex symptoms being experienced by the resident and providing the information to the aged care team on complex issues like family issues, ethical dilemmas, distress.  Should be managed in a timely manner, and not in response to crisis.  May require transfer to hospice for expert palliation if facility is not able to manage. Updated 12/9/2009 28
  • 29. Palliative Care  3. End-of-life care – implemented in the final days or weeks of life.  Care decisions may need to be reviewed on a frequent basis – daily or more often.  The goals are focused towards the resident’s physical, emotional & spiritual comfort, and supporting the family.  Can be a difficult time to identify as residents often have multiple co-morbidities and have a gradual slide in their condition. Updated 12/9/2009 29
  • 30. Palliative care  Symptoms that may indicate the end-of-life phase :  Requiring more frequent intervention – pain management, positioning, etc.  Loss of appetite (anorexia)  Profound weakness  Trouble swallowing (dysphagia)  Dry mouth  Weight loss  Lapsing in and out of consciousness  Day to day deterioration. Updated 12/9/2009 30
  • 31. Palliative Care  It is important to :  Respect the choices that the resident & family members make with regard to treatment options,  Be available to discuss issues with residents and family members,  Provide information in a pro-active way – organise family & doctor meetings when the resident’s condition changes, to keep them informed every step of the way.  Allow the family to prepare for the imminent death of their loved one by keeping them informed of changes as they occur. Updated 12/9/2009 31
  • 32. Palliative Care  Who is involved in the Palliative (multidisciplinary) Care Team? Updated 12/9/2009 32
  • 34. 1. Personal care assistants  2. GP’s  3. RN’s  4. Palliative Care nurses  5. Volunteers  6. Chaplains or pastoral care workers  7. Pharmacists  8. Pain specialists  9. Activities co-coordinators, music therapists, social works, aromatherapists  10. Pharmacists  11. Specialist – oncologist, radiotherapists, surgeon  12. Psychologist, grief counselor. Updated 12/9/2009 34
  • 37. Palliative Care Palliative Care is a TEAM effort. Updated 12/9/2009 37
  • 38. Palliative Care  It is critical that one member of the team assumes the coordinator’s role – eg. RN, GP or DON.  Teamwork between the RN & GP is essential.  The team must be able to meet regularly and assess and discuss management and progress.  The team should be non-heirarchical.  The staffing skill mix should be determined on the individual needs of the family members and resident.  It is recommended that at least one member of the team has formal training in the palliative approach. Updated 12/9/2009 38
  • 39. Palliative Care  Pain & Symptom Management  Pain – “pain is a subjective sensation… and is what the patient says it is, and not what others think it should be…”  1. physical suffering or distress, as due to injury, illness, etc. 2. a distressing sensation in a particular part of the body: a back pain. 3. mental or emotional suffering or torment: I am sorry my news causes you such pain.  www.dictionary.com Updated 12/9/2009 39
  • 41. Palliative Care  Other symptoms :  Loss of appetite (anorexia)  Nausea  Profound weakness / fatigue  Trouble swallowing (dysphagia)  Dry mouth  Weight loss  Lapsing in and out of consciousness  Day to day deterioration.  Insomnia  Bowel problems – diarrhoea / constipation Updated 12/9/2009 41
  • 42. Palliative Care  Pain Management  Often under treated in many ACF’s and hospitals.  Often misunderstood.  Treated on fixed regimes that are not flexible or responsive to the need of the resident, eg. 4/24 analgesia. Updated 12/9/2009 42
  • 43. Palliative Care  Often treated only in the physical element, not including spiritual, social & psychological elements.  In an Australian study it was found that 22% of residents who stated they had no pain had no record of medication administration recorded in their case notes, and 16% did not have analgesia ordered at all! Updated 12/9/2009 43
  • 44. Palliative Care  Barriers to pain management :  Lack of knowledge among nurses and GP’s  Lack of observation skills for pain indicators among PCA’s, and inadequate reporting.  Fear of the consequences of reporting pain among residents – reluctant to complain.  Residents become resigned to their pain.  Generational “stoic” ideals – ‘stiff upper lip’.  Cultural misconceptions. Updated 12/9/2009 44
  • 46. Palliative Care  Review ‘Fast Fact #008 – Morphine & Hastened Death’.  What are the differences between euthanasia & palliation? Updated 12/9/2009 46
  • 47. Palliative Care  Morphine toxicity will cause drowsiness, confusion and loss of consciousness before the respiratory drive is compromised.  If the intent of the therapy is to help the patient and have a potentially good outcome – eg. Relief of pain - but there is a potentially adverse secondary consequence, the treatment is considered ethical.  Euthanasia is not an example of double effect – the intent is to end the patient’s life. Updated 12/9/2009 47
  • 48. Palliative Care  If the intent of giving morphine is to relieve pain, and accepted dosing guidelines are adhered to, then :  The treatment is considered ethical  The risk of a potentially adverse secondary effect is minimal, and  The risk of respiratory depression is vastly over-estimated. Updated 12/9/2009 48
  • 49. Palliative Care  Tools for assessing pain :  1. Pain assessment – should state pain location, type, frequency & severity, as well as the impact this pain has on the ADL’s.  2. Abbey Pain scale for patients unable to verbalise pain. Updated 12/9/2009 49
  • 51. Palliative Care Deciding how and when to implement analgesia. Updated 12/9/2009 51
  • 52. Palliative Care  Opioids used conventionally for moderate pain  - codeine, hydrocodone, oxycodone.  Typically combined with non-opioid (e.g. Tylenol) which limits dose titration  Opioids used conventionally for severe pain - morphine, fentanyl, oxycodone, methadone, oxymorp hone Updated 12/9/2009 52
  • 53. Palliative Care Tolerance to analgesia:  A change in the dose-response relationship induced by exposure to the drug and manifest as a need for higher dose to maintain an effect.  Develops at different rates to these varying effects  - respiratory depression, nausea, constipation  Analgesic tolerance is rarely a problem  - opioid doses remain relatively stable in the absence of worsening pathology and increased opioid requirements after stable periods is often a signal of disease progression Updated 12/9/2009 53
  • 54. Palliative Care  Principles of Pain Management :  Mild pain - Regular (4/24, 6/24 or 8/24) use of Paracetamol or NSAID’s. Updated 12/9/2009 54
  • 55. Palliative Care  Moderate Pain – regular weak opioids – codeine or tramadol +/- adjuvant therapy steroids, NSAID’s (used with caution), tricyclic antidepressants, anticonvulsants. Updated 12/9/2009 55
  • 56. Palliative Care  Severe Pain – paracetamol + opioids patches – fentanyl (Durogesic) or buprenorphine (Norspan), morphine – oral, IM or S/C – by butterfly or syringe driver. Updated 12/9/2009 56
  • 57. Palliative Care  Management of side effects of pain management :  Constipation – regular aperients, increased as the opioids increase.  Nausea & vomiting – usually occurs initially, then settles. Controlled with Maxalon, sometimes stemetil, and Zofran. Also can be controlled with phenergan.  Dry mouth – regular mouth care, ice chips, regular sips.  Confusion or hypersomnolence (tend to cause sleep) – refer to GP or specialist for review. Updated 12/9/2009 57
  • 58. Palliative Care  Fatigue – NEVER normal – always a symptom of something!  Causes – anorexia/cachexia (wasting emaciation) - boredom - pain - psychological issues – depression & anxiety. - sleep disturbance - medications - dehydration - nausea / vomiting * Treating the cause can help to alleviate fatigue. Updated 12/9/2009 58
  • 59. Palliative Care  Cachexia – a syndrome combining weight loss, loss of muscle and visceral protein, anorexia, chronic nausea and weakness.  Common in cases of cancer, but also chronic heart failure, renal failure and dementia.  More often a cause of distress to the family, and may cause extra anxiety about their loved one’s condition.  Family requires extra education about not force feeding their loved one at this time.  Can be managed with protein drinks and supplements if patient allows it. Updated 12/9/2009 59
  • 60. Palliative Care  Nausea & Vomiting:  Causes in palliative care –  1. decreased gastric motility or gastroparesis – from decreased mobility, medications or decreased neuromuscular control)  2. constipation – treat with aperients  3. medications – opioids – treat with anti emetics  4. hyperacidity – treat with antacids  5. dehydration – treat with fluids or sips  6. unpleasant odours or cooking smells – remove the source.  TREAT THE CAUSE TO HELP ALLEVIATE SYMPTOMS. Updated 12/9/2009 60
  • 61. Palliative Care  Personal Care –  The personal carer can do so much to ensure that the final stages of life are as comfortable as possible. Some of the areas to be managed are :  Personal hygiene  Mobility & positioning  Breathing difficulties  Nutrition & hydration  Elimination  Skin care  Spiritual needs Updated 12/9/2009 61
  • 63. Palliative Care  Personal hygiene –  Ensure adequate analgesia has been given prior to hygiene.  Ensure room is warm and comfortable.  Have everything prepared before commencing.  May want to use aromatherapy – under the guidance of a trained aromatherapist, and resident or family permission. Updated 12/9/2009 63
  • 64. Palliative Care  Gentle sponging and massage can be very soothing.  This is a time of intimate contact and a good opportunity to chat to the resident about their care, fears and worries.  If skin is very delicate, may want to use a bath oil rather than soap – this is a good time to monitor skin integrity.  Change linen and gowns as frequently as needed – the resident may become clammy as the time of death approaches.  Attend mouth care frequently. Updated 12/9/2009 64
  • 65. Palliative Care  Mouth Care –  Poor oral health can result from :  Medications – opioids, chemotherapy  Mouth breathing  Oxygen therapy  Decreased nutrition, particularly zinc & Vitamin C  Oral thrush  A good assessment is vital – treating the cause, and implementing thorough and regular mouth care is critical to patient comfort. Updated 12/9/2009 65
  • 66. Palliative Care • A soft tooth brush can clean teeth and mouth without damaging soft mucosa. • Using mouth swabs and mouth wash can provide relief to a dry mouth. • Treat oral thrush with(clotrimazole) Canesten drops • Warm salt water mouth rinses can help ulcers and other breaks. • Peppermint lip cream for cracked lips. Updated 12/9/2009 66
  • 67. Palliative Care  Mobility & Positioning  As the palliative process progresses, mobility will decrease.  The resident will require close monitoring of mobility devices  As resident becomes bed / chair bound, analgesia may be required prior to any repositioning.  Regular skin assessments are required, and use of pressure relieving devices can be implemented – eg. Spenko mattresses, sheep skins, spenko booties, air mattresses, wedges.  Gentle massage and passive movement of limbs can help prevent contractures. Updated 12/9/2009 67
  • 69. Palliative Care  Shortness of breath (dyspnoea)  Resident may experience shortness of breath – some techniques to aid this are : Updated 12/9/2009 69
  • 70. Palliative Care  Positioning semi-recumbent or on the side  Using a fan to blow air around the room.  Oxygen therapy – only to be used under strict guidelines – initiating it at this time contravenes the palliative approach.  Suctioning – only to be done by RN.  Increasing morphine +/- hyocine (to inhibit salivary secretion if very ‘rattly’).  Gentle physiotherapy. Updated 12/9/2009 70
  • 71. Palliative Care  Nutrition & Hydration –  Food & fluids should be offered throughout the palliative phase, but never forced.  Causes of refusal must be explored – eg. Hypersomnolence from morphine review by physician; or nausea treat with anti-emetics.  Studies indicate that patients being palliated do not experience hunger or thirst, and remain comfortable with sips of water or ice chips. (Guidelines for a palliative approach – p.88) Updated 12/9/2009 71
  • 72. Palliative Care  It is considered best practice to encourage food for comfort and enjoyment, rather than for nutrition’s sake – ie. Encourage what ever they want to eat, rather than using protein drinks, etc.  Enteral feeding may need to be considered if dysphagia occurs early in the illness.  PEG or tube feeding is not recommended in later stages, as the body may not be able to digest this amount of nutrition when the body’s systems are shutting down, and there is a greater risk of diarrhoea, vomiting and aspiration. Updated 12/9/2009 72
  • 73. Palliative Care  Elimination –  Constipation – a thorough assessment is vital – if they are not eating they will not need to defaecate!  Is their abdomen distended?  Are they straining?  Do they say they need to go?  Is there unusual nausea – not related to medication?  Hard stools?  Treat with laxative program – gentle osmotics, or bulking agents with suppositories. Updated 12/9/2009 73
  • 74. Palliative Care  Elimination –  Incontinence – may be faecal and / or urinary  Assess and use continence aids as appropriate.  If perineal thrush or severe rash is present, the pads can be removed and the resident nursed on a kylie.  Prompt & gentle perineal care is critical – use of moisture barriers, thorough gentle drying (patting) of the area will minimise trauma and discomfort.  Stoma & catheter care to be attended as required. Updated 12/9/2009 74
  • 75. Palliative Care  Skin care –  Skin integrity can be altered due to oedema of limbs, cachexia, fragile skin, sweating, incontinence, chemotherapy or radiotherapy.  Oedema – elevate the limb, minimal handling, bed cradle, using ‘blueys’ if the limb is weeping.  Prompt wound management  Use of medical sheep skins, pressure mattresses, spenkos, wedges, etc.  Gentle sponging, avoiding soaps – use bath oils or lotions.  Soft cotton gowns that wont increase sweating.  Prompt management of incontinence.  Ensure diet & fluids are adequate depending on stage of illness. Updated 12/9/2009 75
  • 77. Palliative Care  Spiritual needs –  If advance care planning has been done well, the spiritual needs of the resident should be clearly known.  Cultural and religious preferences must be respected and acted upon.  Family involvement at this time is critical for access to family priests or specific cultural practices.  Pastoral care workers can help comfort staff and residents.  Complementary therapies can be important to the resident and family. Updated 12/9/2009 77
  • 79. Palliative Care  The room –  Should be preferably a single room.  Should be well lit, and well ventilated  Remove any unnecessary clutter or furniture.  Encourage mementos, picture, flowers, or other items of comfort to be within sight.  May require a fold out bed, or a recliner chair for a relative to sleep over.  May have aromatherapy or candles – under strict guidelines.  Have the resident’s favorite music on a CD player. Updated 12/9/2009 79
  • 80. Palliative Care  The family –  Good communication between the facility staff and the family is critical at all times through out the palliative process.  The care staff might be close to the resident, and also be grieving. This is the time for the family – you should be comforting them, not the other way around. Staff should seek counselling if they cannot cope.  The family should be allowed to stay or visit when ever they wish.  The family members may wish to help with personal care – this needs to be monitored carefully, but encouraged if it is positive for the resident and family member.  Professional, religious or spiritual counselling or support can be very helpful at this time. Updated 12/9/2009 80
  • 81. Palliative Care  Signs of imminent death –  Movement slows, facial muscles relax  Gastrointestinal function slows – abdominal distension, incontinence, nausea =/- vomiting may occur.  Body temperature falls – can feel cool, clammy, looks pale.  Circulation fails – pulse can be irregular, weak & thready.  Respiratory system fails – Cheyne-Stokes breathing, or weak and shallow respirations can occur.  Often the ‘death rattles’ occur as secretions pool in the pharynx and bronchi – can be distressing to the family, but not the resident.  Loss of consciousness. Updated 12/9/2009 81
  • 83. Palliative Care  Signs of death –  No pulse  No respirations  No blood pressure  Pupils fixed and dilated.  The doctor is called to declare death. Updated 12/9/2009 83
  • 84. Palliative Care  Care of the body after death –  Should have been determined in the Advanced Care Plan.  The family / loved ones should be allowed to stay as long as they want.  Hygiene care may be necessary if incontinence has occurred – standard precautions followed.  Cultural / religious wishes are to be taken into account. Updated 12/9/2009 84
  • 85. Palliative Care  Ideally, the body should be re-alligned in bed, and made to look comfortable and presentable for any family or friends who may wish to spend time with the resident.  Place a rolled towel under the jaw if mouth is open.  Clutter is removed from the room, and fresh flowers placed if possible.  The funeral home is contacted when the family is ready.  Follow the facilities procedures regarding jewellery or valuable removal. Updated 12/9/2009 85
  • 86. Palliative Care  Where to seek help –  Palliative Care Australia  Local Palliative Care Associations  Grief counsellors  www.health.gov.au  www.eperc.mcw.edu  www.pallcare.org.au  www.pallcare.asn.au Updated 12/9/2009 86
  • 87. Palliative Care  References :  “Guidelines for a Palliative Approach in Residential Aged Care”, Australian Government Department for Health & Ageing, 2006. www.health.gov.au/palliativecare  “Fast Fact & Concept #008 – Morphine & hastened death”, Von Gunten, C. www.eperc.mcw.edu/fastFact  “Clinical Practice Guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers.” www.mja.com.au MJA supplement, 18 June 2007, Volume 186, number 12.  “Long Term Care Assisting – Aged Care & disability”, Scott, K., Webb, M., Sorrentino, S. & Gorek, B. Elselvier Australia, Marrickville, NSW, 2204.  “National Palliative Care Strategy – A National Framework for Palliative Care service Development”, Publications Production Unit, Commonwealth Department of Health & Aged Care, 2000.  www.pallcare.asn.au Updated 12/9/2009 87